My Husband, My Life, My Love, My Family, My Cancer

Micmel

Goldens~ thank you so much. I hope your DH is ok. Sounds complicated, but hope when all is said and done you can be on that ranch down the street from your family.

Good morning Mara~

illimae

Yay Micmel 🎉

mara51506

Missed you this morning, but good afternoon to you Mel my friend. I am glad to see you today.

I completed my 3 walks, same route, somehow this time was just under 10000 though I did not take out garbage which may have added some to the total yesterday. Today was 9645. 2 walks in the sunshine and then 1 when overcast. Decided that was it even though a fourth is in me, want to sleep more soundly tonight instead of walking in the late evening. Tomorrow will be tricky weatherwise, we may get some thunderstorms so we will see.

Micmel

cowgal

Booboo - I will continue praying for you and your husband.

Bliss58

Popping in to say hi. I need to catch up again, but skimmed the last page to find you're still stable, Mel! Congratulations on the great report.

Yay!! I got my vaccine March 5! J&J, one and done. No reaction at all and I'm very pleased. We're in for a wallop of a snowstorm Fri-Sun, so will be hunkering down and continuing to pack up our house for another week.

Love and hugs to all who have scans coming up and yay for other good reports. I need to catch up!

Micmel

Bliss~thank you very much! It is relief for sure. I’m glad you got your covid shot. That’s awesome. I’m working on getting mine. I’d like to get the J &J shot not two shot crap. I wish it was easier to find out how. I’m going to ask my oncologist tomorrow when I go to see him. Don’t like these appointments, but with a stable scan. I’m ok with it. I would think they would want our group to be done because we are at risk. Each state is so different. Good to see you and I’m glad you had no side effects. For once!!!!

candy-678

Hi all.

So do you guys ever have to message/call your MO's office for other non-health stuff? Let me explain.

I received a bill from the new cancer center and I called the 1-800 number on the bill. They said I need to talk to my doctor's office about financial aid or programs offered from the drug companies. This was about an Xgeva shot I had in Dec and my co-pay. Shot was $5,000 and I owe $1,000. So I messaged my MO's nurse (thru the portal). She said yes she gets messages about patient bills and she forwards them to where they need to go. She said she was fine with me messaging her about non- health stuff like this.

So today I had to send another message to her about needing a note from my doctor concerning being "disabled" and not getting penalized for early withdrawal of funds from my IRA. I guess if you are under 59 1/2 years old you pay a 10% penalty for early withdrawal of IRA funds. My tax preparer said with a note from my doctor I can keep from paying that penalty. So I messaged her asking for a note.

I feel that I should just keep my communication to a minimum and only about the cancer. Am I bothering them? Do you all find you have to call the office about other stuff? I hate to do it, but I need to.

Hi Bliss. Good to hear from you.

moth

candy, my jaw just dropped because I got my first Xgeva vial yesterday & it was $700 (but all fully paid for my province & insurance) & I thought that was ridiculous... & I paid nothing. OMG, $1,000/ every 4 weeks copay? Crazypants!

I can't speak to your office as I'm sure it's different everywhere. Mine has a drug access navigator and a social worker team that deals with the paperwork end of things... But generally speaking IME with healthcare systems, the front line admin staff are used to getting all sorts of requests that are not 'their' job and sorting out where to transfer your calls or whom you should be speaking to. The financial aspects of your care are an integral part of cancer care so I would not hesitate to call them..... You could just ask if it's the right place to call or if there's someone else you should be talking to but I think they'll tell you if that's the case

Micmel

I think that’s what they are there for. The help their patients. Paperwork questions. Paperwork. Anything that they may be asked within reason. I wouldn’t feel bad, I would feel appreciation.. don’t feel bad candy. You need to take care of your things. I always go to my primary care for all my paperwork needs.

illimae

Candy, like Moth I am stunned by that $1,000 charge. I pay nothing for it and honestly I’m speechless. How in the world is anyone expected to survive financially with that insanity. I have no experience with what you’re dealing with, I just can’t imagine. I’m just mentally stuck on it.

50sgirl

Canfi, My Mo’s office does all sorts of things I didn’t expect. When I was about to start Ibrance, the office automatically found funding for me. The same thing happened with Afinitor and Verzenio. They also complete paperwork when needed, so a note about the need to withdraw from your IRA falls within their usual tasks. You would not be bothering them. It is part of the service they provide.

Mel, Congratulations on your good scans. You are a superstar.

Hugs and prayers from, Lynne

candy-678

Thanks guys. I did ask the nurse if there was a nurse navigator or Social worker. She said no navigator and 1 social worker, but on maternity leave now, and just for me to message her and she would take care of it. The portal is easy that way. I just send her a message. She responds back pretty quickly. But she handles the messages AND accompanies the doctor in the exam room too. She better get paid good for all she does.

Yeah, my Xgeva is billed as $5,500. Lupron is $3,500. CT of chest, abdomen, pelvis is $7,000. MRI of abdomen is $5,300. Those are the costs billed to the insurance. Then I have deductible, co-pays, etc. It is wild.

Moth- You said Xgeva vial? Do you give your own shot, as you are in Healthcare? Also I am doing Xgeva every 3 months now. Monthly for the first year, then quarterly. Lupron is monthly though.

Mae- I am hoping with Medicare and a supplement--- Jan 1--- I will be in better shape financially. These costs are with a pretty good insurance plan, I thought.

moth

candy - yup, I get the Xgeva vial. My dd is an RN & I was trained to do these too so they just let me take care of it lol

this might not help anyone at all & I don't understand the US system but a lot of people on my twitter feed were very excited that there's a free COBRA extension as part of the covid recovery package? Apparently tons of people would qualify for it even if you hadn't had it / refused it etc. So anyway, just throwing that out there in case someone might be able to benefit from what I always think of as "snake healthcare" lol

candy-678

moth- I googled the COBRA stuff with the Covid relief plan. Does not apply to me as I have been on COBRA for the full 18 months, ending in June. So my COBRA days are over. Sounds like good for those that are just getting on COBRA as the premiums will be less. Free, I do not know. Got to be a loophole somewhere.

I can give shots too, but I doubt my insurance would go for that. The Xgeva and Lupron are intended to be administered in the clinic setting under the umbrella of cancer care. I would probably have to pay full price to get the meds given to me for home administration. I do not think I want to open that can of worms.

Micmel

How can our health system be that messed up. ?? That’s ridiculous.. I have high company’s. But it gets paid for. I have Medicare.

mara51506

More productive day here. Have already been on 4 separate 1/2 hour walks. Two around the neighbourhood and two were to and from the burger joint. 13000 steps so far which makes me happy. Mentally feel better than yesterday as well. Not sure what else I may do today, if the mood to walk strikes me I will or not since it has been 2 hours already. My DB may call as my microwave needs to be replaced, bottom rusty and small holes. My fault for leaving tea I make in there overnight allowing steam to wreck the inside. Won't spin around properly. Thats about it for me.

Micmel

Good afternoon Mara~ glad you’re having a more productive day. I went to the oncologist and he agreed with me about doing 100 mgs for ibrance , he said I’ve been stable so long he felt ok with that. Blood work in six months. Scan in a year. I can handle that! Of course xgeva shots every three months. (Yuck). But I feel very lucky. He was thrilled about how I’m doing. “Beautiful “ scan he said. Nothing. Like hearing that. Only thing would be better would be not having cancer at all. But I’m trying !

Hope everyone is doing ok. It’s pretty nice where I am today.

mara51506

Mel, I am so glad you are able to drop the dose of ibrance and may it bring less fatigue along with it so you can feel energetic enough to get through a day. Very happy for you. Never had xgeva but imagine it comes with additional SE which is never fun. It always feels good when MO says that you are doing very well. Gives a boost of confidence that way and I am glad you got to hear that. The weather here is so beautiful and sunny, I want to get lunch and go walking again. Seems obsessive but there is really nothing happening at home for me. It is a bit chilly but nothing I cannot deal with. Will be waiting for buds to start appearing on trees. I also enjoy dog watching as well when I am walking. Some of them are just so precious and I am not a dog person so there is that.

Micmel

Mara~very much a dog person. I love owning a dog. I lost my tag last year. Tore my heart out. I dog watch also. Yes it does make you feel good when your oncologist is happy.

I really hope the reduction in doseage helps. He said he wasn't sure it would .everyone is different. I'm hopeful. Has anyone out there done it? And felt less fatigue!??

candy-678

Hi all.

Mel good to hear the report from your MO. Maybe the drop in Ibrance dose will help you. And Wow to the yearly scans and bloods in 6 months.

Wow mara to the walking. I am lucky if I use the treadmill weekly. I just do not have the willpower to exercise much. I do not know why not, nothing else to do in my busy daily schedule. LOL.

I talked to a church friend on the phone this morning. She too is not attending in person services. She got her 2nd Covid shot this morning, but says she is still leery of crowds. She is 75 years old and has health issues.

Not much going on here. Tomorrow I am going to Dollar store for some items. Will go early to beat the crowd. Sunday is online church. I am still unsure of when going back to in person services. I watch the service on Facebook and can see some do wear masks, but others do not. Plus the singing. Still not safe feeling for me.

I got the letter from my MO nurse for the IRA penalty thing. She sent it electronically. I just hated to bother her with it.

I called the COBRA folks this morning. May be getting a lower premium for April, May, and June. They do not have it all hashed out yet. Then my COBRA expires in July. I think I may get some discount on my premiums with Obamacare then. Will have to check into that. So, I am thankful for the Covid Relief Plan going to law yesterday.

mara51506

Candy, I was having a lot of trouble motivating myself to go out but the depressive symptoms that normally creep in on days I do not do anything is so much worse, I am starting to be routine in going on 3 to 4 walks though. It is also becoming easier too physically. Hardest walk today was hourlong walking session to the burger joint to pick up my order and not stopping for a snack, 30 mins each way and only took less than 2 minutes to get the food but I did it so I was glad.

Micmel

20K posts ladies. Never dreamed this thread would do so well. Thank you to my little second family here. I care for you all so much. Thanks for sharing and caring.

Anonymous

Mel - that is just crazy to be able to go 6 months for bloods and a year on scans. Man am I jealous! I really hope 100 helps with your fatigue issues, I know it helped mine.

The ovary removal surgery schedule keeps getting moved around and today I received two emails informing me of two different pre-surgical visits and two different surgery dates - the initial proposed at the end of this month and the new one in April. Oh, and another letter informing me of CT and MRI scans are now booked for 17 May. I thought I was just getting a CT this time around, but guess not. Or half of this is admin errors. Or its all planned depending on my counts this month. Eh - it will get ironed out one way or another.

I seem to have strained my upper right shoulder and neck from holding everything in place too long when stitching the other night. Its just annoying to move my head in a certain direction.

Hope everyone is well and will be having enjoyable weekends!

Micmel

Sondra~thank you. My neck was bothering me all last week because of the stress of scans. Too tight my muscles and it hurt to move it down. I feel for you! I hope your neck feels better soon. It's so bothersome. I’m hoping the ibrance change in dose will help. I’m hoping so much. I need it to work.

GoldensRBest

Mel - My MO dropped my Ibrance dose to 100mg 3 months ago. Huge difference in fatigue. Hope you have the same results.

BevJen

Mel,

Congrats on your oncologist news, and also on switching from 125 to 100. I was switched to the lower dose but was only it for 2 months before switching to keytruda -- but in my mind at least, the fatigue was less. Hope it's so for you, too.

illimae

Hi all, got my new ride on Wednesday and my new Fitbit today, feeling good and inspired to get dtuff done. Hopefully I can get DH on board too, do we can sell the house and get back to the cabin in late April.

Micmel

love the new ride Mae!!!!

Micmel

Lynne~ I don't know how I missed your post. Thank you for the well wishes. They mean a lot coming from you. I hope you're well and think of you often when I'm using the fabric. Hugs to you my sweet friend.

Thanks Bev Jen ! I hope it helps. I truly do !